I’ve been having a lot of conversations with people about DBS lately, which is exciting. It feels like more and more people are having the procedure, or are considering it. I always tell everyone that their experience will be unique, but it has been truly life changing for me and my family. It isn’t a cure, and it doesn’t exactly mean a return to “normal” but my world is so much better than it was previously. I was worried about living in a house with a second floor, I was concerned about being able to travel. I feel like all those concerns aren’t even on the radar anymore.
Part of why I started this blog was to chronicle my own journey with PD and then DBS, and to share what I’ve learned with you. One thing I didn’t know much about was the voltage adjustments. I haven’t talked to a lot of people about the adjustment process, and I think this is because a lot of doctors (and patients) don’t spend as much time on the DBS programming as mine does. I am very lucky because not only are my doctor and her nurse extremely experienced with programming for DBS, but I also live close enough to their offices to go in regularly - about 3 or 4 times a year - to do small adjustments. As my doctor reminded me this week when I went in for programming, her goal is alway to make her patients as close to perfect as possible after every visit. Some doctors (and patients) settle for better. She won’t let me stop at better. She is always pushing for perfect, which is one of the reasons I have so much respect for her.
From the first appointment when I was “turned on” my programming has been a four-way communication, between my nurse, my doctor, my husband and me. We spent a lot of time at that first appointment trying out each of the four contact points on each electrode that was implanted. While the surgeon also placed each one carefully, the brain is a tricky thing, and the four contact points on each wire can provide a lot of flexibility when it comes to getting the best results, and minimizing side effects. My nurse does the actual programming - placing the receiver over the device in my chest, and using the Ipad to check the battery strength and make minor adjustments (technology is amazing, isn’t it?). I can’t really feel it doing anything different, but when I walk down the hall with every 0.1 volt adjustment to each side, I can immediately feel my gait getting a bit more fluid.
Then my doctor and husband weigh in as I strut down the catwalk (or, shuffle down the office hallway). My husband has been an important part of the process because he sees things I don’t. He sees which leg might be a little stiffer, or if the dyskinesias caused by the side-effects of my medication are causing my arm to flap, or me to chew the inside of my cheeks. Yes, it may sound weird, but when I have these kinds of side effects, you’d think I’d notice something as big as my right arm flapping like a bird, but you kind of don’t realize you’re doing it. He’s also good at helping me describe what my symptoms look like, when I only know how they feel. It really does take a village.
I’ve had about five adjustments since I was turned on 16 months ago. Most have been very minor, but they always make me tired. It sounds strange, but somehow that current in your brain makes a very real impact on my movement, my PD symptoms, and my whole body. It’s kind of amazing, and makes total sense, but no one ever really told me what to expect when I had adjustments. Usually starting about an hour or two after the appointment, and for about 48 hours, I feel a bit “off” - out of sorts and tired. This adjustment has been a little bigger than previous ones - 0.2 volts on one side, 0.1 on the other - and it has had a bit more of an impact. I’m still a little tired, and have had to make some adjustments to my meds to keep from flapping. But, I’m now 48 hours in and feeling better. I am continually amazed at this gift I’ve been given, and I’ll take the adjustments to keep getting to perfect.